First Darzalex Infusionby Angie
17 Nov 2024
8:11 pm0
Yesterday, we spent five hours at the Stanford Infusion Center so I could receive my first Darzalex Faspro infusion. It is a targeted monoclonal antibody that they hope will manipulate my bone marrow to eliminate some of the problematic antibodies that make it hard for me to get a transplant match…I think. There was a lot of information to process. This is just a few steps past experimental for someone with my condition; it’s usually used for patients with multiple myeloma.
It’s actually a slow-push subcutaneous injection, meaning they put a sort of mini IV into my little belly folds and push the medicine slowly over about 5 minutes. Then I have to stay in the room to be observed; this first time they required 4 hours of observation, but I’ll be doing this every week and the future appointments will only need one hour of observation.
There are a lot of possible allergic reactions and side effects, both from the Darzalex itself and from the pre- and post-treatment medicines they have to give me, but luckily things went really well and we’re pretty confident that we can move forward with this. Really well with regards to how I tolerated the treatment; we won’t know for another month or more if it will make a difference for me. If it improves my chances of getting a match even a little, it should be worth it.
Transplant List Activated ✅by Angie
26 Oct 2024
1:10 pm4
Yesterday, it became official: I am now active on the organ list for a heart+liver transplant.
We just spent three weeks in Hawaii visiting the Carlsons. It was truly magical to have so much mental and emotional time to feel normal – three weeks in which all this transplant stuff just disappeared. It felt like living in a dream. But reality set in the day we arrived home when the transplant coordinator called to notify me that the cardiac team had just met and submitted their approval. That was last Friday; the liver team met on Wednesday with the same result. On Thursday, Jim and I both met with Dr. Lui (my cardiologist and main doctor in all this). It was an unexpectedly emotional conversation. I am so grateful to have Dr. Lui and all the amazing people at Stanford helping me through this process.
It’s unlikely that anything will change anytime soon. I technically have to be ready to take the call at any time, but I am going to be very, very difficult to match. There are some antibody-cancelling therapies they plan to try that may help a little. Still, we’re looking at months or even years waiting on the list, rather than weeks.
Sorry I haven’t kept up with posting the nitty gritty details of appointments and tests it has taken to get here, but there was just too much. Next up is multiple rounds of additional vaccines that I need to fortify my immune system response to disease before they give me a bunch of stuff to inhibit my immune response to foreign tissue.
Thank you for following along in this difficult journey ahead of us. We appreciate your continued support and love. As usual, we’ll continue posting here to keep you all informed as things develop.
Going Homeby Jim
16 Sep 2024
12:09 pm0
The nurse just told us that she’s ready to start the discharge process. The requirements for her to go home were 1) walk around 2) eat food 3) use the bathroom. Angie has had her walk, eaten lunch, and used the restroom. The nurse is reading her the discharge instructions right now, so we’re almost ready. The IV is still in, and that’s usually our gauge for when they’re serious about us going home. We’ve had to stay even after they told us we were going home, so we wait until the IV before we consider ourselves ready to go home.
We have not heard results from the cardiologist, but the doctor did tell us that the preliminary results from the catheterization was okay. The numbers were in the normal range, they weren’t great, but they weren’t terrible. So I guess that’s as good as we can expect.
When they put the IV in earlier this morning, we told them that sometimes it is hard to place, so they called in a specialist to put it in using an ultrasound! I’d never seen that before, and it was pretty cool. We could see on the ultrasound the vein and then the needle as she pushed it in.
Okay, and now the IV is out! We’re headed home. Thanks for following along today!
Catheterization at Lucile Packardby Jim
16 Sep 2024
7:09 am1
We just checked in at Lucile Packard Children’s Hospital for Angie’s catheterization. This is one of the many tests they want to do for her transplant evaluation. She’s had several of these before, so we’re pretty familiar with the routine. They’ll be putting a catheter up into her heart to measure pressures and function and see how her heart is doing. She stays awake the whole time, but under mild sedation. The procedure is low risk and should only take a couple hours. It’s really incredible to me that they can do something like this to gather the information they need. We’re really fortunate to live in a time and place that has the technology and personnel who can do this stuff.
Normally, this procedure is same day and we’d be going home afterward. Angie is 2nd in the cath lab today, so she’ll be going in around 10 PDT. They told us to be prepared to stay overnight for observation, but they told us that last time and we ended up going home that same day. I guess it really depends on what they see and how Angie recovers. I’ll post again after the procedure when we know more. Thanks for following along!
UPDATE 12:06: I’m in recovery with Angela and we just spoke to the surgeon. He said everything went well and he thinks we’ll probably go home today. (Yay!) Angie has to lay flat for a couple hours under observation before she’s allowed to get up, that’s to make sure she’s safe after going in through a major artery. I’ll add another post when we’re ready to head home.
A Day of Training & Testingby Angie
4 Sep 2024
4:09 pm1
Today was a long day at Stanford. Jim took off work to join me for trainings with the Clara (cardiac transplant coordinator), Tiffany (a transplant social worker), and Christina (a pre-transplant dietician). Everyone has been super kind and considerate. Last time we did this, I felt like I was at the bottom of a waterfall; this time around, I felt almost like I was interviewing for a job. They need to know that we are (as Clara charmingly put it:) “In it to win it” – meaning that we are emotionally and mentally prepared and are willing to be compliant in the recovery process and beyond. They also want us to know and accept the worst-case scenarios before going in. Since we did the evaluation five years ago, a lot of the information was already familiar, but there were a few surprises. My family will balk, but I was crestfallen to learn that post-transplant I will have to give up raw sushi – and Jim was even wearing his sushi socks today! Good thing I also love tempura rolls.
I took a “Frailty Test,” which sounds a lot fancier than it actually was. They checked my grip strength (26kg thank-you-very-much) and balance and tolerance of quickly standing and sitting over and over again. Then we went to the phlebotomy lab and had a whole bunch of blood drawn. I’m glad I was already done with the frailty test, because I felt a little woozy after that. But then we got some amazing Greek food that perked me right up.
The last several weeks have been full of paperwork, as well as routine care appointments to be sure I’m overall as healthy as possible: PCP physical, dental checkup, eye exam, mammogram, women’s health stuff, PFTs (perfusion tests to check out my lungs), ultrasound of my extremities, hep-b vaccine, abdominal CT scan…etc. Now we’re focusing on transplant-specific stuff. Last week, I met with my hepatologist and also one of the liver transplant surgeons; tomorrow, I meet with the cardiac transplant surgeon. This Friday I’m going to Lucile Packard (the children’s side of Stanford) for a pre-op before my catheterization there on September 16th.
A Few Updatesby Jim
6 Aug 2024
3:08 pm0
1: Angie met with the oncologist today for the final word on her biopsy results. The short answer: Benign! They are calling it a Myelolipoma, which is “a rare, benign tumor made up of mature adipose tissue and some hematopoietic elements” …i.e, a little blob of fat cells encompassing some bone-marrow-wanna-be cells that think they’re supposed to be making new blood. Our bodies are weird.
2: As many of you know, we have officially started a new transplant evaluation, so the months ahead are going to be packed with appointments. A few family members expressed an interest in following all the details of the process, but we don’t want to inundate anyone who just wants to stay abreast of major or emergent medical issues. Thus, we’re starting a new category in this blog: “Transplant Process“. If you want to read about all the doctor visits, trainings, meetings, tests, and procedures along the way, you can keep an eye on this category. Otherwise, stick with just the “Hospital Updates” entries.
3: We have also received requests from loved ones who want to visit us, especially once we are no longer allowed to travel. Whitney asked that we put together a calendar indicating when we (and our guest room) are available. If you want access to that calendar, let us know and we’ll send you a link.
Transplant Coordinatorsby Angie
6 Aug 2024
3:08 pm1
Transplant – especially a dual-organ transplant – requires coordination between over a dozen different specialists and departments. Good programs have coordinators that work with the patient to keep the whole process on track. Last week I had a long chat with Claire, my Cardiac Transplant Coordinator. We talked through what I can expect appointments-wise over the next few months. She referred me to Jess, the Cardiac Transplant Scheduler, to actually get everything on the books.
Today I had a delightful conversation with Heather, my designated Transplant Coordinator with Cigna, my health insurance. Honestly, I’ve been putting off returning her calls for almost two weeks because my past experience with insurance-assigned health coordinators, nurses, and advocates has been quite disappointing: I consistently know more than they do about my health issues, but they just plow through their set scripts anyway. I thought this would be one more unhelpful person trying to be helpful. I’m happy I was wrong. Heather called to talk me through my insurance coverage for this huge undertaking, and how it will evolve through the four “zones” of transplant: Evaluation (where I am now), on the list, in the hospital, and post-discharge recovery (Cigna has fancier names for them, but that’s the gist). She also talked through some of the resources and support programs that Cigna can offer if we struggle to meet the financial demands of transplant at any point along the road. In addition to lots of good information, she also asked very sensible questions and listened to my answers – so refreshing!